Thoughts about hospice after 24 years

August 13, 2012

As some of you now know, I have submitted my resignation and will be leaving Hospice of the Panhandle. This will be the last column I will write as a Hospice of the Panhandle representative.

Years ago we at Hospice of the Panhandle set out to "make hospice a household word." We knew that as long as people spoke of it in hushed tones and thought that accepting hospice signified giving up, people would never call for help. We needed to provide information to medical providers and the general community that would dispel the misunderstandings that were barriers to the utilization of care. That is how this column started more than a decade ago.

I would like to think that we are in a very different place now then we were when we talked about that goal. We do care for more patients now on a daily basis - about 200 per day - than we did then. And the number we serve grows every year. People frequently tell us about the care a loved one received, including how compassionate we were and how they "could not have done it without hospice." We receive numerous thank-you notes every week and the number of referrals from the community (patient, family member, friend, etc.) illustrates that we have been successful in communicating that anyone may call for help.

In parting I would like to offer a few thoughts about hospice and share what I think are some of my key takeaways from my work experience.

The end of life is an important time for us humans. At the end of life people need to make amends with those to whom they have had difficulty, take care of their business matters to assure their loved ones are not burdened, tell their story and share their legacy so the lessons they have learned will serve to help others and they will somehow not be forgotten. People need to come to terms with misdeeds or bad decisions. They need to find forgiveness for themselves or for another. They may need to work on spiritual concerns. They may need to say (In Dr. Ira Byock's words), "Thank you," "I love you" or "goodbye." To put it quite simply, there is work to be done at the end of life and hospice is the entity that understands and enables that work to occur.

It is difficult for people who are rooted in fighting death to do their end-of-life work. The time frame for this transition is different for everyone. But honesty from medical providers helps patients move more easily away from fighting, toward accepting. What I have learned in all these years is that the physicians who are gently honest with their patients about the limitations of the treatments are those that give the greatest gift to their patients. They are the physicians that look at the patient holistically, recognizing that a person may benefit more from having quality time to bring their life to a dignified closure as opposed to just having more time. They are the physicians whose patients are referred earlier and who receive months of hospice care instead of days or hours. One physician in our area figured out how to do this a long time ago. For as long as I can remember, this physician calls hospice himself, with the patient and family sitting right there in his office. He talks to the hospice worker a few minutes and gives them the basic information, then he simply turns the phone over to the patient or family member to set up the appointment. He communicates, in the simplest way, that he believes hospice is the best option at this time and bridges the fear the patient and family may have by making the call for them.

We as consumers will and are, driving the change in how we die in this country. A few weeks ago we received a call from a woman who stated that she had been diagnosed with breast cancer and had been offered chemotherapy that might extend her life but would not eliminate the cancer. At best, she was told, she had four to six months to live. She decided that she would not pursue any treatments and would leave immediately for a trip to Europe with her husband. She was in the driver's seat of her own living - and dying. In the future I believe we will see this more and more.

Do not fear hospice. It is a wonderful service, but it is one that is most beneficial if it is accessed as soon as possible for the patient who is declining and nearing the end of life. Anyone can call hospice with a referral, to request information or a benchmark assessment to determine medical eligibility. Just call 800-345-6538 or 304-264-0406.

Thank you to all who have followed the columns as well as the growth of Hospice of the Panhandle. And please continue to spread the word about hospice to all you know.